At the End of Life: True Stories About How We Die

Summary

What should medicine do when it can’t save your life?

The modern healthcare system has become proficient at staving off death with aggressive interventions. And yet, eventually everyone dies—and although most Americans say they would prefer to die peacefully at home, more than half of all deaths take place in hospitals or health care facilities.

At the End of Life—the latest collaborative book project between the Creative Nonfiction Foundation and the Jewish Healthcare Foundation—tackles this conundrum head on. Featuring twenty-two compelling personal-medical narratives, the collection explores death, dying and palliative care, and highlights current features, flaws and advances in the healthcare system.

Here, a poet and former hospice worker reflects on death’s mysteries; a son wanders the halls of his mother’s nursing home, lost in the small absurdities of the place; a grief counselor struggles with losing his own grandfather; a medical intern traces the origins and meaning of time; a mother anguishes over her decision to turn off her daughter’s life support and allow her organs to be harvested; and a nurse remembers many of her former patients.

These original, compelling personal narratives reveal the inner workings of hospitals, homes and hospices where patients, their doctors and their loved ones all battle to hang on—and to let go.

Related Articles

Book Preview

At the End of Life - Francine Prose

Initiative.

Introduction

Last Days

FRANCINE PROSE

The longer we live, the more of life we experience—youth and age, passion and loss, the beginning and end of a romance, the birth and death of loved ones—the more we may find ourselves distrusting the ability of language to tell us what these life-changing experiences are like. No amount of love poetry can prepare us for the moment when one person starts to matter to us so much more than anyone else. Reading the scene in Chekov’s The Lady with the Pet Dog in which Gurov looks in the mirror and is shocked to see that he has gray hair cannot really prepare us for the pure weirdness of catching sight of our own reflection—and realizing that we are that gray-headed person. Maybe the reason there are so few persuasive scenes of childbirth in literature (I’m excepting the one in which Emma Bovary finds out she has given birth to a girl and turns her head to the wall, or those in which a young woman dies, off screen, in labor) is that it’s so hard to convey the amazement of giving birth, of seeing a new human being emerge into the world.

There has never been a shortage of fiction, history, poetry, and memoir concerned with the end of life. Violent death is always a favorite, but many writers seem to have felt they weren’t doing their job unless they included plenty of old age and ordinary death in the domestic and social panorama they captured on the page. Important and dramatic family deaths punctuate War and Peace, Anna Karenina’s suicide was a spectacular tour de force, Little Nell’s death famously broke the collective heart of London, and what would Balzac’s characters have done if they hadn’t had all those wills and legacies to incite their schemes and struggles?

I used to think that the eponymous protagonist of Tolstoy’s novella The Death of Ivan Ilych suffered the worst imaginable death. He realized he’d led his entire life wrong, then screamed for three days and nights until he found some not-very-convincing relief in the healing ministrations of a servant. But after reading the essays in At the End of Life, it occurred to me that Ivan Ilych was at least spared the degradations and inhumanities of a modern high-tech death: he wasn’t bullied into intubation, hooked up to a ventilator, forced to endure drastic life-saving measures after he had resolved to die, had received his family’s blessing, and had completed a DNR order.

Remarkable for their honesty, variety, and compression, the essays in this collection tell us what it is like in the early years of the twenty-first century to experience, or to witness, the end of life. As the saying goes, no one who has been there has come back to tell the tale, but the dying appear as characters in many of these pieces, so well rendered that we do get a sense of what their last days, if not the last moments, were like for them.

Obviously, the voices we hear are the voices of the living, of men and women who have survived the deaths of parents and partners and children. We hear, too, from health professionals, doctors, counselors, hospice workers, nurses, a nursing home worker, and an EMT dispatcher, people for whom the end of life—the biological processes and the psychological ramifications—is the basis of what they do, their profession and their calling.

Each writer has a story to tell, an individual perspective on singular characters, incidents, and details. But I would suggest reading the book straight through, or as close to straight through as possible; make no mistake, many of these essays are extremely skillful at recalling and making us feel the pain they describe. What emerges by the end is a larger picture, a jigsaw puzzle assembled from individual pieces, a complete, if disquieting, image of what the end of life is like at this point in our collective history.

You may notice certain elements that recur more often than you’d expect, further testimony to the notion that the end of life involves the soul as well as the body. Apparently, one way to know death is near is that the dying occasionally report visits and conversations with people already dead. Some combination of ritual and instinct prompts the living to open a window in the room where someone has just died, perhaps to enable the spirit to leave the premises in which the husk of the body remains.

But perhaps the most striking theme that recurs in essay after essay is how many decisions there are to be made at the end of life. Who will take care of the elderly? What is our obligation to our parents, and how much of our lives must—and can—we give over to their needs? What do we tell the dying, and what do we do with the requests and the information they impart to us? How do we celebrate—or accept—the fact that the dying are often the same people, only sicker, that they were in their prime, the same kindly or difficult parents, the same loving or rejecting relatives? How much should be done to prolong life, when should those efforts stop, and how hard should we struggle for, or against, the wishes of the dying? How do we endure grief, and help others endure it, and how do the living get beyond the feeling that every death is a failure? It would be wrong to suggest that these essays answer these questions; rather, they demonstrate the range and the seriousness of the ways in which the questions have been asked.

The essays by the health professionals are often startling in their honesty, as doctors and nurses and hospice workers remember the first death they witnessed, the most cataclysmic, the most wrenching, the most frustrating, instructive, or simply the saddest. The deaths they handled badly and the ones they handled well. The thoughtfulness of these pieces, the high level of consciousness of their writers, contrasts startlingly, and paradoxically, with the number of essayists—the civilians, if you will—who remember the ways in which the health care system (staffed by individuals who are less feeling, more doctrinaire, more callous than the contributors to this collection) betrayed and dehumanized loved ones. Occasionally, these two groups overlap, when a doctor writes of the difficulty, the sense of powerlessness, and the confusion of trying to make those very same decisions and deal with the system not as a provider but a consumer: when a parent’s life is ending.

In a number of these essays, a professional who has treated or helped the dying is accosted by a relative who wants the doctor to understand who the dead person was in life before age and illness turned a vibrant person into a dying patient. And in a way, these essays perform that same function, resurrecting, if only for a moment, the person who has been lost and making us see what that loss means to those who remain.

What’s striking is how many voices make up the chorus that sings to us from these pages, how resonant are the stories they tell, and—by the time we have reached the end of the book—how important we feel it is to listen to the dying and to those who remain. Many of these narratives feel like messages in bottles, washed up on the shore—urgent communications whose authors hope they will reach the land of the healthy and the living. The result is impressive, and we can only feel grateful for having experienced the intensity and the sheer amount of life that has been compressed and contained in a book about its end.

Francine Prose is the author of many best-selling books, including A Changed Man, Reading Like a Writer, and Blue Angel, which was a National Book Award finalist. Her newest nonfiction book is Anne Frank: The Book, the Life, the Afterlife.

To Morning

ANNE JACOBSON

Anne Jacobson is nearing the end of her residency, but she’s stuck in the midst of a night from hell—three codes in a row—and her free-fall adrenaline response to the alarm that means someone is dying.

A shriek in the darkness drew out my shallow, sleeping breath in a singular gasp. Disoriented in the windowless room, I felt a familiar pounding in my chest that jostled my brain awake. As I fumbled for the light, the small black box continued its ear-splitting siren as it fell off the nightstand and bounced under the bed. I knelt on the gray, stained carpet and fished the beast out from the dusty collection of medical journals and soda cans that lived there. Squinting in the fluorescent light, I saw that the digital numbers coalesced on the pager screen and formed a room number. I grabbed the white coat on the chair and ran.

Three years before, on my very first call in this busy Chicago hospital, the senior resident had directed me in a perky voice to formulate elevator thoughts on the way to evaluate a patient. This sort of preplanning worked well on the way to see a child with a fever in the emergency room or an elderly patient who had fallen out of bed. But this particular call came on the code pager, meaning a patient had stopped breathing or had no functional heartbeat or both. This was the third code in the last twelve hours. And so there would be no elevator (the stairs were faster) and no coherent thoughts—except a blistering disbelief that my sleep total for this thirty-hour shift was going to be around twenty minutes.

I knew colleagues who loved the rush of a code, and as a new resident caught up in the action but without real responsibility, I suppose I had loved it also. But now, just months away from finishing residency, I was one of the senior residents in the hospital at night. I dreaded my free-fall adrenaline response to a code that meant someone was dying, apparently against their own or someone else’s wishes. At that moment, flying down the dim stairwell in the predawn stillness, I was short on both adrenaline and compassion. Parcels of it had been left all over the hospital—the largest discarded at the bedside of a twenty-year-old woman who was now dead.

Previously young and healthy with no underlying medical conditions, she had arrived in the emergency room earlier in the evening. She was pale and breathing rapidly but joking with her mom and aunt that their girls’ night out would have to be postponed. However, the high fever, telltale rash, and initial laboratory tests all pointed to meningococcemia, an uncommon but highly lethal infection that can collapse vital organs in a matter of hours. One of the greatest risks is a condition known as disseminated intravascular coagulation, the bacterial toxins causing the coagulation system to go haywire. Blood clots in all the wrong places, cutting off oxygen supply and causing organ death. Finally, when the body can’t clot anymore, it bleeds—from delicate vessels close to the surface and in dark, internal hollows.

I watched and hovered as the young woman’s body did exactly this, succumbing to the raging infection. Several hours after her arrival in the emergency room, she was sitting rigid and upright, clutching the bedrails and struggling to breathe. I looked into the wide, panicked eyes of the patient and her family and explained that the medicine we were administering would help relax her before we inserted the tube that would help her breathe. Later in the evening, her heart began to race, trying to compensate for a dangerously low blood pressure. I did my best to communicate to her mother and aunt the severity of her condition and the medications and procedures that might be necessary, all of us peering out from behind the paper gowns and masks required in the rooms of those with serious and contagious infections. They clutched her hands, one on each side, leaving only when the nurse quietly but firmly asked them to step out when the code began. The chaplain guided them away as thick purple blood trickled from her nose and mouth with the chest compressions. My colleagues and I marched down the code protocol, cracking vials of ultrapotent medications, hanging bags of IV fluid and blood, pushing them with a silent prayer through her veins. Her blood pressure continued to fall, and her heart ultimately failed despite our desperate attempts to do something, anything, we could. I looked down at her young, bloated face, the dark eyes so similar to those of the women who had been at her side all night long. Our training had taught us about moments like this, how to tell a family in a compassionate but direct way that someone they loved had died. Looking into the eyes of the dying young woman at that moment, I couldn’t imagine what I would possibly say.

A few minutes later, the anxious faces of her family crumpled as I quietly delivered the unthinkable news: We did all that we possibly could, but Tamara has died. I’m so very sorry.

What had that news cost the patient’s mother, her aunt, her grandmother, coming from the mouth of a pony-tailed, bleary-eyed girl not much older than the child they had lost? Did they understand that my quavering voice and lowered eyes came from a place of real compassion? Or that my hasty exit at the sound of the pager was because someone else was now trying to die? The universe had not stopped, had not allowed us a reprieve. I would need to pull myself together in some other dark stairwell, the wails of grief trailing behind me. I prayed consolation would come for her family in time. My own fragile solace came from a deep knowing that her medical care had been correct and thorough and timely. This time the universe didn’t cooperate; we were all humbled, face-to-face with our own breakable humanity.

Leaving the young woman’s family with the hospital chaplain, I winced at the next room number on the code pager. The area of the hospital known as the skilled nursing facility housed patients who were too sick to go home—or more commonly, back to the nursing home—but not acutely ill enough to qualify for a full hospital admission. Most of the patients were elderly, often in the advanced stages of dementia. Codes in the SNF were rarely successful. The team would go through the motions, cracking frail ribs with chest compressions, unable to locate accessible blood vessels beneath papery, gray skin. I arrived at such a scene in the room of an elderly man; his eyes were open, glazed, and vacant. Another senior resident was at the head of the bed squeezing air into his lungs with an oxygen bag and mask. A wide-eyed medical student pumped rhythmically on his chest, quietly mouthing the number of compressions. The intern was preparing the defibrillator, ready to shock the patient if an appropriate heart rhythm existed. Do we know his code status? I asked loudly above the din of activity in the room. The question seemed obvious, but on more than one occasion I had participated in a code while a misplaced chart was discovered with a large Do Not Resuscitate the team had overlooked.

The charge nurse informed us the patient was indeed a full code, despite the fact that the eighty-five-year-old had advanced renal failure and dementia. He had been sent from the nursing home with a fever and was completing a few more days of intravenous antibiotic treatment for a urinary tract infection. The day shift says no one has been here to see him, continued the nurse. His nephew is listed as the next of kin, but no one can get a hold of him. I nodded and glanced at the resident with the oxygen bag. Should we intubate? she asked quietly. Let’s wait and see if that will be necessary, I responded. She nodded in agreement and redirected the student’s hands on the patient’s chest. We both had experienced this before—terminally ill patients with family on paper but no one who was involved in their lives. Sometimes the story was as simple as greed, of wanting to keep a monthly disability check alive as long as possible. Other times it was painfully complicated—a now frail and helpless patient had, at some point, ostracized everyone around him through drink or drugs or abuse. Regardless of the circumstances, it was always poignant to be involved in a life-and-death decision for a stranger with no one else to speak for him.

My heart was still heavy with the loss of the young woman in the ICU, the defeat of watching her go in the face of everything we knew how to do. The faces of her family were still with me, grieving the loss of a future that would never be. Now we were keeping a man alive at the other end of life solely because we were medically and legally responsible to do so. His unfocused eyes were turned in my direction as we ran a soft code—doing what was required but stopping as soon as our efforts appeared futile. It was not a judgment on the value of his fragile and worn-out body or his worth to society. Rather, at these moments we are called to be our most authentic physician selves, to ease the burden of suffering, to be compassionate unto death. I will follow that method of treatment which according to my ability and judgment, I consider for the benefit of my patient, states the Hippocratic Oath. I reached for the patient’s cold white hand with my own sweating palm and held my other one up in the air. Enough, that’s enough. The team exhaled collectively—we knew this was right. I touched his forehead and whispered, Rest well. I wondered if anyone would come to his funeral.

Death notes written in the chart are detached and clinical. On paper we physicians stick to stark physical facts: asystole unresponsive to epinephrine × 2, defibrillation attempted × 3 without success. Pupils fixed and dilated, no palpable pulse or audible breath sounds. Time of death 0253. We reviewed the process of the code with the students and junior residents, making sure they knew what was done and why we had stopped. The paperwork was completed with quick efficiency, the body of the elderly man left to be cleaned and prepared for the morgue. There were new admissions lining up in the emergency room—pneumonia, heart failure, alcohol poisoning, stroke. Most of them would improve with medicine or surgery or time, would live to leave the hospital, would see a daughter’s wedding or the birth of another grandchild. By morning the needs of the living would have eclipsed the memory of tonight’s losses, the mourning left to families and friends or to no one at all. I spoke some superficial words of encouragement to the weary intern at my side and mentally divided up the work ahead of us.

We worked until our heads were heavy and nodding over admission orders, the first pink rays of dawn breaching the horizon. Two hours remained until rounds would begin on this April Sunday morning. I had fallen into the deep, drooling sleep that was now shattered by code number three. This time it was an elderly woman whose colon had been partly removed several days before for a localized cancer. Aside from some high blood pressure and arthritis, she was otherwise healthy, her surgical recovery fairly uneventful. Because she was in a unit where patients’ hearts are monitored continuously, a dangerous rhythm known as ventricular fibrillation was noted immediately, the electrical impulses too uncoordinated to function effectively. The best treatment is early defibrillation, or shocking the heart. The nurses had already pushed in the bright red crash cart and were placing rubbery pads on her translucent chest. Dr. Johnson is on the way. He was coming in early for rounds, breathed the head nurse. Okay, good, I replied, glancing at the sawtooth pattern on the monitor and welcoming the thought of the older doctor’s experience and calm. Charging . . . all clear . . . The woman’s chest heaved upward as the shock was delivered, the pattern on the screen unchanged.

The room was now overflowing with nursing staff, doctors, students, respiratory therapists, and lab technicians. At some point I noticed a thin, shaking figure in the corner, his blue eyes wide and panicked. Perhaps he had arrived for an early morning visit. Perhaps he had been there all night. In the pressured rush, no one had noticed the quiet little man who was now watching his wife trying to die.

One of my medical school professors frequently reminded us, You only see what you are prepared to see. When Dr. Johnson arrived, he walked straight through the crowd to the patient’s husband, placing an arm around his shoulder. He had been their doctor for over twenty years, attending to them together in the clinic. Undoubtedly, he was prepared to see this man at his wife’s side. We continued with cycles of chest compressions, oxygenation, more defibrillation, and medication. The chaotic heart rhythm continued, undeterred by anything we did. Doctor and patient spoke quietly for a few moments, their heads bent together in private conversation. The man nodded in understanding, and the two of them approached the bed together. Thank you, everyone, called out Dr. Johnson. That’s enough now. The room was silent as activity abruptly ceased. It’s okay, he murmured in the man’s ear. You can hold her hand. She will know that you’re here. The man shuffled forward hesitantly, tenderly lifting his wife’s hand to his cheek. Bessie, his voice cracked. Where are you going without me?

The breath caught in my chest, twisting open a space that now felt enormous and raw. I exhaled, turned away from the crowd, and gazed out at an exceptional sunrise over Lake Michigan, a soaring skyline watching its city awaken below. The familiar sounds of alarms, telephones, and hospital banter drifted in through the door as the team filed out. Oblivious to all of it, the man held his wife’s empty gaze in his own unblinking eyes, the last agonal beats of her heart flickering across the monitor. Suddenly aware that I was an unnecessary presence in this intimate moment, I turned and stepped out into the bustle and chatter of weekend rounds.

Hey, so what happened in there? I blinked absently, looking into the bright eyes of my alert and curious colleague who had arrived to take over the next shift. What did happen in there? A man wordlessly said good-bye to the woman he had loved since he was a teen. A soul slipped silently away. The sun rose again, and it was magnificent. I unclipped the code pager from my scrubs and placed it in my friend’s outstretched hand. Oh, one of Johnson’s patients, a few days postop. V-fib. Nothing we could do. I recognized the momentary flash of sympathy and panic and relief cross her face, felt it in my own chest as she attached the pager to her hip. The baton had been passed. After rounds she would update the patient list, unceremoniously removing the names of the three who had died, grateful it had not happened on her watch. I finished rounds, attending to lab results, vitals signs, and the usual morning greetings. The needs of the moment required all that was left of my caffeine-fueled attention. The dead would be left where they had fallen.

It was nearly noon when I tossed my stained and rumpled scrubs into the hospital laundry cart. My clothes from the previous day were still folded on the desk in the call room. I didn’t feel like the same person who had put them on yesterday morning. Slinging my bag over one shoulder, I leaned against the cool steel wall of the elevator as it hummed its way down eight floors to the hospital lobby. I stopped in front of the long row of glass windows to fumble for my keys. Visitors circled in and out of the revolving door, sweeping in with the fragrant air—the first warm day of a long-awaited midwestern spring. On another day I might have taken the El downtown, found a patch of grass along the lakefront bike path, listened to the waves crash on the graffiti-covered breakwall, and basked in a few vacant, sun-laden hours until it all began again—but not today. Instead, I imagined the moment when I would close the blinds in my tiny apartment a few nondescript blocks away, pull the covers over my head, and sleep away this glorious afternoon. In the darkness it would be easier to forget their faces.

A timid hand on my shoulder startled me. I turned to a face that seemed vaguely familiar, her haggard eyes apologetic. I’m sorry, Doctor. I didn’t mean to bother you. I’m Tamara’s aunt, um, from last night? Her steady gaze drew me back to the bedside of the young woman, the panicked eyes of her family meeting mine, her face bloating, blood pressure dropping, nothing, nothing working. Together we had hovered over her, masked and gloved and gowned, shielding ourselves from infection and death with thin yellow paper. I wished now for a protective mask for the aunt with the broken heart, a papery veil for my own weary spirit. Was there a cool, dark place of rest for the grieving? We wanted to thank you, she whispered. We know you did all you could. She was a beautiful girl. She would want you to know that.

Her dark eyes held mine in a long silence, unmasked, both of us beginning to lay an unfinished life to rest. This unexpected compassion would not erase the exhaustion and doubt of a questioning young physician, but her gentle gift would allow a measured peace until morning.

I embraced her, and stepped out into the light.

Anne Jacobson is a family physician for the Cook County Health System in Chicago, Illinois. She earned an MD from the University of Wisconsin and a master’s in Public Health from the University of Illinois—Chicago. Her work has appeared in JAMA, and she lives in Oak Park with her husband, John, and children, Daniel and Maya.

On Bearing Witness

LAURIE FOOS

After seven years of watching her father battle cancer, Laurie Foos still felt his death seemed sudden. For all the preparation, there was no preparing.

My father called me the day he was going home to die. I remember being surprised that he’d even felt well enough to make the call. In acute renal failure, he’d been admitted to his final hospitalization and had spent the last three weeks in agony from dialysis that left him in painful muscle spasms so intense that he screamed, and never, in the seven years of sickness that had preceded this, had I seen him in so much pain. When he wasn’t in agony or asleep, he’d been hallucinating, seeing trains in hallways and children with numbers stamped on their heads jumping up at him from rolling carts. He had finally come to the end. His team of doctors ultimately decided to insert a nephrostomy tube into his cancerous kidney, allowing his body to eliminate enough waste to stop dialysis and allowing us to take him home to die. It had been a battle to get the doctors to admit that was what they were doing, and only when I’d used their medical jargon—palliative care—did they concede that the tube was not going to filter poisons and jump start the kidney as initially promised.

But on the phone that day, he sounded better. Coherent. Like himself.

They’re letting me go, he said.

Oh, thank God, I told him. You’re going home. You must be so glad to be getting out of there.

As much as I knew this was the end and had actually been praying for it, I did not want the end to come while he was still in the hospital. In the seven years since his first bowel resection, I’d come to know—and to hate—the small hospital just minutes from my parents’ home on Long Island. When he was first diagnosed in 2001, I lived in Massachusetts and would make the drive down to spend the long days in those rooms. But in 2005, I moved back to Long Island to be closer to him. Semiprivate, they called the rooms, though there is nothing semiprivate about watching another patient retch or vomit just inches away. They all looked the same, no matter which wing, all painted in the crème color that is meant to be calming, all with two beds and two metal chairs for visitors, all with one recliner that denoted the next step out of bed after surgery or serious illness, which would be removed, for space reasons, as soon as the patient was able to walk. All of them with the same dull lighting, all of them cramped with one window we always hoped my father would be closest to, as the heat exacerbated his constant discomfort and the pervasive odors that accompany dire illness. Only in the end did one of the oncologists grant my father the one private room on the floor. For three weeks my mother and two brothers, both of whom lived nearby, gathered around his bedside and struggled to find things to talk about other than illness and dying. For three weeks I spent the long days with my children, then ages three and